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Death Becomes a Matter of Choice

  Dr. Neil Wenger and Dr. David Wallenstein, Physician
  Dr. Neil Wenger, Director, UCLA Health Ethics Center and Dr. David Wallenstein, Physician, UCLA Palliative Care Service

Photography: Ann Johansson

California’s new physician-assisted suicide law gives terminally ill patients and their doctors a legally sanctioned process to have responsible and compassionate conversations about choices at the end of life. UCLA’s Neil Wenger, MD ’84 (RES ’87, FEL ’89), MPH, and David Wallenstein, MD, are at the forefront of discussions about how to implement this new law.

Gov. Jerry Brown signed the End of Life Option Act on October 5, 2015, making California the fifth state in the U.S. to legalize physician-assisted suicide. Though Gov. Brown struggled over his decision to sign the law, “In the end,” he said, “I was left to reflect on what I would want in the face of my own death. ... I am certain ... it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.” The debate over physician-assisted suicide has been controversial and often contentious. Now that it is law in California, hospitals and physicians must develop their own policies for how it may be implemented. U Magazine contributor Dan Gordon spoke with two physicians at the forefront of these discussions at UCLA: Neil Wenger, MD ’84 (RES ’87, FEL ’89), MPH, director of the UCLA Health Ethics Center, and David Wallenstein, MD, a specialist in pain management and palliative medicine.

Both of you, in your roles at UCLA, are intimately involved in end-of-life issues. What are your views about the legislation signed into law by Gov. Brown?

Dr. David Wallenstein: I am an advocate of patient autonomy. Looking at it from that perspective, I’m relieved that patients are being listened to in this way. In terms of my own personal experience, I became interested in medicine 30 years ago because I was an AIDS volunteer back before there were any treatments available for AIDS and HIV. And there was a great deal of suffering, and many people chose to end their own lives, and they really had no professional guidance in doing this. So, from that perspective, I’m glad that there now is, in California, a legally sanctioned process for patients to begin to have these conversations with their physicians. It’s very important for physicians to be able to speak about this issue responsibly and compassionately to patients. It also is a really important point to make, in the context of this discussion, that data show that in the four states where physician-assisted suicide has been legal (Oregon, Washington, Vermont and Montana), the number of people who actually go through with physician-assisted suicide is really quite small. When patients can talk openly and honestly about these issues with their physicians, it often becomes possible to find other ways to address their fears and concerns, and being able to have these conversations is a great comfort to them. I am hoping this new legislation will facilitate better dialogue between patients and physicians on this difficult issue.

Dr. Neil Wenger: It may very well be that this kind of permission is what’s necessary to open up this dialogue. But there also are some concerns inherent in this issue. One is whether or not a physician should be participating in an activity, the goal of which is to end life. And a second concern is whether or not this might erode trust between some groups of patients and their physicians. Certain groups, especially disenfranchised groups that have had difficulty getting adequate medical care all the way along, at the end of life have difficulty believing that the right thing to do may be to receive less medical care. And if the physician has, as part of his armamentarium, the consent of the state to actually help provoke death, that is an additional potentially difficult point that may need to be addressed in these rather sticky end-of life discussions. Thus, it is particularly important to be aware of the protections within the law. The law contains many carefully crafted checks and balances. There even is a provision in the California law that isn’t in the Oregon law that requires patients to be taken aside in a closed space, with no one else there, to make sure that they’re not being coerced.

You raise the role of the physician in this. But facilitating the kinds of discussions you encourage perhaps is not a skill that has been taught to physicians in the past, and having to do this may be outside the comfort zone for many. What should they know to have the best possible conversations about these issues?

Dr. Wenger: It’s going to take an enormous amount of education for physicians to lead these discussions, and having these conversations is a lengthy process. There are questions that need to be asked not only of the patients, but also of the consultant physician, questions to consider about when a patient should be referred to a mental-health provider for evaluation, how to interact with that mental-health provider to know whether or not a patient’s emotional state is encumbering his or her ability to make rational choices. This fits into the broader question of how to teach doctors to do advance care planning. Doctors are just now learning how to do this well. This new law will add greater complexity.

Dr. Wallenstein: When a patient makes a request for physician-assisted suicide, it is incumbent upon the physician to take his or her own beliefs out of the equation while talking with the patient. The physician needs to hear, without judgment, what the patient has to say. That doesn’t mean a physician has to do something that he or she feels is inappropriate or immoral, but the physician does have to have the conversation in such a way that the patient’s feelings and beliefs and needs are heard, genuinely respected and honored as part of the patient’s right to both self-determination and autonomy.

Some opponents of the law expressed concern that there will be people — maybe those going through depression or temporary pain — who might be vulnerable to being pressured into making a choice not necessarily in their best interest, and that there are opportunities for abuse.

Dr. Wenger: This law has been tested in Oregon (where the state’s Death with Dignity Act went into effect in 1997), and that has not been shown to be a problem. There were a few celebrated news reports of individuals saying that they were feeling coerced, but the fact is that in the nearly 20 years Oregon has had this law, it doesn’t appear that there have been problems among the approximately 850 people who have exercised the option. That said, California is not Oregon; Los Angeles County alone is three times bigger than the entire state. And Oregon doesn’t have nearly the ethnic diversity that we have here. We could potentially have some difficulties that Oregon hasn’t experienced.

Dr. Wallenstein: California is a much more complex and diverse environment, and it will be incumbent upon the physicians here to speak to these issues in a way that’s sensitive to the individual patient’s background.

Are there misconceptions that patients and their families might have about what this law means for them?

Dr. Wenger: It is written into the law that this does not allow an infusion of medication to kill the patient, it does not allow mercy killing, and the patient has to self-administer the lethal medication. That is a really, really important component, but there could be misunderstandings.

Dr. Wallenstein: There’s another confusion that I have heard and that I think is very important to clear up. The issue of physician-assisted suicide is not, strictly speaking, part of palliative care; it’s a far bigger and more general issue. I am a palliative-care physician, and I do end-of-life care, and I think it is critically important to consider the issue of physician-assisted suicide separate from that of good symptom and pain control. One of the misconceptions that I have had to deal with, just as this legislation was being discussed, is an assumption by many patients, and also by some physicians, that physician-assisted suicide is going to be the exclusive domain of the palliative-care doctor. I think that’s a serious misconception that really needs to be put to rest, not only because it is inaccurate, but also because it conflates the specialty of palliative medicine with the fictional “death panels” that were discussed while the Affordable Care Act was being constructed. Another thing that I think people need to understand is that this is not an instantaneous process. A patient can’t come in and say, “Hey, I want to die,” and 15 minutes later, it’s done. People need to understand that it’s a very measured and carefully thought-out process.

Dr. Wenger: And it also is important to note that — based on what we have seen in the other states that have legalized physician-assisted suicide — a third or more of the patients who receive the medication ultimately choose not to use it.

What systems currently are in place at UCLA to effectively implement the new law, and what will need to be developed that’s maybe not in place right now?

Dr. Wenger: We have a lot of very smart doctors at UCLA, and we have really, really good palliative-care physicians, but we haven’t yet figured out the system to implement the law. It is an ongoing discussion that needs to take place. We still don’t know exactly when the law will take effect — probably late in 2016, and recently there’s been talk that it might not happen until 2017. In Oregon, the voters initially approved physician-assisted suicide in 1994, but it wasn’t reaffirmed and implemented until 1997.

What, then, does UCLA need to do to move this forward?

Dr. Wenger: We need to bring together all the parties who will be engaged — doctors, nurses, pharmacists, social workers.

Dr. Wallenstein: Clergy.

Dr. Wenger: Yes, clergy. And patients. That’s how we will attempt to develop policy around this.

  Drs. Neil Wenger and David Wallenstein.

The question of physician-assisted suicide was rejected by California’s voters in 1992, and follow-up bills failed in the Legislature in 2005, 2006 and 2007. Why do you think the time was right now for it to pass in the legislature?

Dr. Wallenstein: It’s multifactorial, but I think that a large piece of it is demographics. There is a very large segment of the population, the Baby Boomers, who are moving into the final phases of their lives, and historically we have been a generation that has been very assertive about what it wants. There has been a great deal of patient empowerment around diseases like HIV and breast cancer, and I think that has led to a shift in opinion within the general public about how much control patients should have over their own lives. And, finally, I think the role of the physician has changed drastically over the last 40 years. The physician no longer is broadly seen as an all-powerful medical deity — which is a change that many of us are very happy about. Now, patients really are seeing themselves as having dominion over their own bodies. And that includes dominion over the choices they will make as they approach the end of their lives.

For more information, please read the language of the End of Life Option Act.

 





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